Jordan Lee Witzig came into our lives on August 9, 1997, at 3:44 pm weighing 6 lbs, 7 oz, and measuring 19" long. He was so beautiful, he looked just like his big sisters,
Katelin and Lauren. We thought he was perfect! He had a little trouble sucking the first couple of days, but after that, no problems. I noticed that he didn't lift his head up when he was laying on his tummy, but it wasn't until he was around 1 month
old (September, 1997) that I became concerned. I waited for his 2 month check-up, then mentioned it to his pediatrician. We decided to see a neurologist, who only ordered 2 tests; one was a
CPK, which came back slightly elevated. The other one, they
wouldn't tell us the name of the test, was sent out of state. We got the results back in December: Spinal Muscular Atrophy, type 1. We were told to take our baby home and enjoy him because he wouldn't live to see his 2nd birthday.
Of course, we
were devastated - how could our baby have a fatal disease that no one had ever heard of? We did a lot of research, made some hard decisions, and tried to enjoy every moment.
We had a good Christmas, and Jordan stayed healthy until March. Then he
caught a cold, and a week later his lips turned blue. We took him to the emergency room - x-rays showed a collapsed lung, so he was admitted. Round 1 lasted for 5 days, then we were home again. Round 2 came in May. Same thing, he caught a cold and
was admitted for a collapsed lung. Five days later, he was well enough to take a bottle, but he aspirated his formula - he had lost his swallow reflex. Next came aspiration pneumonia, which took 2 weeks for him to recover. Meanwhile, we had to make
the decision to have a feeding tube put in. We didn't want him intubated for the procedure, and we were blessed with a pediatric surgeon who was willing to do it under a local anesthetic. We took Jordan home for a few weeks to recover from the
pneumonia before we took him in for the g-button, which was done in June.
We were done with hospitals. We knew that everything we were willing to do for Jordan could be done at home. With a wonderful pediatrician, Dr. Ronald Luce, and some
great home nursing care, we were able to keep Jordan home for 4 more months.
Jordan stayed a very happy child. His eyes would sparkle, and he gave everyone big, beautiful smiles. His favorite TV show was Teletubbies - he was fascinated with it.
He also loved Pooh bear, and his favorite toy was a See and Say Farm with the animals that stand up. It was very easy for him to move and make the noises - he would light up the room with his smiles whenever he made the sounds.
On October 27,
1998, Jordan had had enough. He knew there was a better place for him, so he just closed his eyes and left this world. We had a beautiful funeral service, lots of stuffed animals and balloons, an uplifting song, and we sent 3 dozen balloons up to
We miss you so much, little buddy,
and we can't wait to be with you again.